DEMIAN - Promoting positive everyday experiences for people with dementia (2004-2010)

Primary Investigator: Prof. Dr. Andreas Kruse, Dr. Susanna Re

Project Team: Marion Bär, Charlotte Berendonk, Marlies Böggemann (Former Project Member), Sonja Ehret, Roman Kaspar, Marion Motruk (on leave), Silke Stanek, Mechthild Schönit

Financed by: German Ministry of Education and Research

The DEMIAN project is part of the Nursing Research Network Nordrhein-Westfalen

Contents

• DEMIAN: The Concept
• DEMIAN I (2004 – 2007): Developing a method for enhancing quality of life by stimulating positive experiences
• DEMIAN II (2007 – 2010): Promoting competences in the emotional support of people with dementia. Intervention programs for healthcare professionals and for informal carers.
• Cooperation
• Expert Consultation
• Publications und Materials
• Contact

DEMIAN: The Concept

DEMIAN (DEmenzkranke Menschen in Individuell bedeutsamen AlltagssituationeN) is a concept for the emotional support of people with dementia.
The primary concerns are individual positive everyday situations of dementia sufferers. These situations are to be collected and implemented systematically by careers to facilitate positive experiences.
The conceptual framework of DEMIAN encompasses several important aspects in dementia care: First of all, it focuses the subjective experiences of the individuals with dementia. The capacity to evaluate the significance of people, objects and situations survives in spite of cognitive decline. Even with severe dementia, the sufferers retain preferences and personal values. These individual preferences and values are related to biographical and social contexts. Addressing a person with dementia as a "valuer” helps to preserve their identity and autonomy.
For the supporting persons, verbal and emotional expressions and spontaneous actions are important ways of recognizing individual significances. Emotions are of particular importance in dementia care, as the capacity for nonverbal emotional expression is another resource which persists beyond cognitive impairment.

DEMIAN I (2004 – 2007): Developing a method for enhancing quality of life by stimulating positive experiences

Aims

In the first phase, the development and evaluation of the DEMIAN approach was conducted.
The study was based on the following research questions:

1. Is it possible to assess the participants’ positive and significant everyday situations that can be used for individual interventions practically for long-term care? To what extent are the participants, their relatives and the careers able contribute to this assessment of positive situations? How does the creative process of intervention development work?
2. To what extent is the participants’ current mood enhanced by such intervention?
3. Does repeated establishment of positive everyday situations have a lasting effect on the participants’ habitual well-being (their prevailing mood)? Are the effects of such intervention stronger, in relation to the effects under consideration, than those of unspecific intervention, in other words, intervention not based on known positive everyday situations?

The study design was therefore structured as follows:

• a) Phase A: Identification of individual everyday situations indicating positive significance and the creation von individual intervention schedules by selection of practicable situations that were demonstrated to be positive.
• b) Phase B: Empirical examination of situational and long-term effects of the DEMIAN intervention program in contrast to alternative treatment not based on specific topics.

Methods

Interviews were conducted with the demented participants, their relatives and carers, who where we asked for personally experienced or observed positive everyday situations experienced by the participant in question. A spectrum of potential positive situations was thus gained for each participant, from which we, together with the carers, selected those situations that could practicably be realized without any major investment of time and effort, and could thus be easily integrated into the daily routine by the carers.
Finally, an individually tailored intervention schedule was created for each participant, which formed the basis for the following 3-week course of treatment, with several specific individual positive situations being realized each day. A control group, in contrast, was given alternative treatment consisting of unspecific conversations ("small talk”) about general, impersonal topics, but of about the same extent as the DEMIAN treatment. The pre-post-tests collected data of the participants’ mental state, measured self and carer assessment and by videotaping interviews.

Results

Twenty five nursing homes in two German regions (Nordbaden and Weser-Ems) participated in the study. A total of 98 residents with mild, moderate and severe dementia were studied.
The results reveal that individual positive everyday situations that are practical in long term care can be identified irrespective of the severity of the severity of an individual’s dementia. It was found to be particularly beneficial to take the point of view of everyone involved (the patient, the patient’s relatives and the nursing staff) into consideration, and provided a multifaceted spectrum of individual-related positive experiences. Such an individual approach was found to be necessary (as opposed to a general definition of "these things are positive for dementia patients”). Conversations and situations focusing on face-to-face encounters and specific emotional concern accounted for the majority of positive everyday situations, with physical comfort and reminiscence and stimulation of memories also being important categories.
The participant’s immediate reactions to the intervention were predominantly positive (almost 75%, on average, reacted positively). In contrast, the emotional ’success’ of the unspecific attention was positive in only about half of the situations documented.
The rate remained stable over the course of the intervention. It seems that the situations chosen retain their positive significance for a prolonged period of time, or it may be that the carers responsible for the patient vary the forms of intervention according to the current situation.
However, in contrast to the momentary effectiveness, when it came to the outcome for the long-term emotional well-being, we found only small effects, and the difference to the control group was not statistically significant.

DEMIAN II (2007 – 2010): Promoting competences to provide emotional support of people with dementia - an intervention program for carers and family care givers

The current study focuses on the implementation of the evidence-based intervention concept for the emotional support of dementia sufferers in practical long term care.
Building on the results and experiences of the first study, the DEMIAN approach was developed into a concept and elaborated theoretically, before being integrated into the nursing process.
The current objective is to enable carers to work autonomously with the concept. The effects of working with DEMIAN on the carers are being examined by two randomized controlled trials. The first study focuses on health care professionals in nursing homes, and the second on family care givers. In both studies, participants of the intervention group are first given training and are then challenged to apply the concept on their own.

Cooperation

The Institute of Gerontology is cooperating with nursing homes throughout Germany for the DEMIAN project. These institutions are contributing to an improvement in the quality of care for people with dementia by participating in this research project.

Cooperation partners in DEMIAN I:

Cooperation partners in DEMIAN II:

Expert Consultation

The DEMIAN project is being mentored by experts in gerontology, gerontopsychiatry, nursing research and institutional care.

• Sabine Jansen (German Alzheimer’s Society, Berlin)
• Dr. Willi Rückert (Kuratorium Deutsche Altershilfe, Cologne)
• Prof. Dr. Ruth Schwerdt (University of Applied Sciences, Frankfurt am Main, Faculty of Health and Social Work)
• Prof. Dr. Johannes Schröder (Department of Geriatric Psychiatry at the University Hospital of Heidelberg)
• Dr. Joachim Wilbers (ProjectCare GmbH, Frankfurt am Main)

Publications and Materials

Böggemann, M., Kaspar, R., Bär, M., Berendonk, C., Kruse, A., & Re, S. (2008). Positive Erlebnisräume

Böggemann, M., Kruse, A., Re, S., Bär, M., Berendonk, C., Kaspar, R., & Seidl, U. (2007). Förderung der

Bär, M., Böggemann, M., Kaspar, R., Re, S., Berendonk, C., Seidl, U., Kruse, A., & Schröder, J. (2006).

Böggemann, M., Bär, M., Kruse, A., Kaspar, R., Re, S., Seidl, U., & Berendonk, C. (2006). Individuelle

Bär, M., Böggemann, M., & Kruse, A. (2005). Demenzkranke Menschen in individuell bedeutsamen

Kruse, A. (2005). Lebensqualität demenzkranker Menschen [Quality of life in dementia sufferers]. Zeitschrift

Contact